• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Life on Hard Mode

Looking back on my life before Crohns is like remembering a great dream. While it is vivid, it lacks reality. The summer of my sophomore year in college was beyond epic. I felt larger than life and had everything I could ever want. I was always very conscious of my health and it showed. I am 6'3" and was a lean muscle build of about 195lbs. I worked out often and ate a high quality diet with an emphasis on protein. As I recount my story, lots will be omitted. There are some things I just don't want to remember.

My only health vice was alcohol, I partied a lot before I got sick. Floating down the river on a $4 intertube with a beer in my hand was the life. The sun reflected off the water and cast a shimmer on the damp bodies of the 3 girls that came with me. I adjusted my sunglasses and let them see me look at them. They simply smiled and asked for another brew. I grinned and tossed them a Summer Shandy out of my floating cooler. We did this floating weekly. We would rub sunscreen on each other, have great conversations and drink some beer from the brewery I worked at. One day after a float like any other, I had to cancel plans to grill at my place. I didn't feel well and started having to go to the bathroom a lot.

My junior year stated and I powered through the first semester, denying that any problem existed. I gave up drinking completely hoping it would help. I started losing weight but, I was too focused on my grades to let it get to me.

By my second semester, the pain began. I am not a stranger to pain. I used to fight competitively and actually ruptured my appendix while taking on someone in high school. The pain was annoying but, tolerable. I started noticing blood when I would go to the bathroom. I slept a lot and felt tired all the time. I went to see a doctor, a man named Dr. Peller, a name that haunts me to this day.

By my senior year, I had been diagnosed with Primary Sclerosing Cholangitus (a liver condition related to crohns) and UC (Wrong, I have Crohns.). He prescribed 40mg of prednisone and Asacol. I improved for about a week. Then, I grew worse each day. I voiced concern. He said I should drink more water. He started me on a 10mg/week reduction of the prednisone after a few weeks. (Note: that's an insanely large reduction for a patient that is getting worse.)

Two weeks later, one of the worst times in my life begins. Slowly I grew worse and worse. I started having to sleep 12 hours a day, my energy dropped and my whole life came to a dead stop. I'm barely tolerating the music I am being forced to endure as I am on hold. I'm trying to call my doctor again. It's always hard to get in touch with him but, this time he's on vacation. Out of fear and stupidity, I begin only eating saltines and water. One of his staff members picks up, I roll my eyes so hard it hurts. "Hi, it's me again. Yeah, the same guy that just called. No, don't transfer me! I understand but... Yes. No. Listen, it's getting worse. I just went for the 23rd time today. No, I'm not exaggerating. When can I talk to my dr? it's been 3 days of this. Did you ask if I could take an anti-diarrheal? No?! Then what am I supposed to... Kool-Aid?! Are you serious? Do you even know what IBD is?"

12 hours later, pain began. Now, I don't mean your average pain. On a scale of 1 to 10 where one was a tickle and 10 was getting my appendix popped, this was 13. It was almost a euphoric experience as I writhed in agonizing pain. I talked to myself and began counting the holes in my saltines before I ate them. I remember yelling "Give me the medicine, you bastard." and realizing that I wasn't on the phone. "Why are you doing this? Please help me!" I pleaded to god. After two more days of that I became docile, exhausted, sad and defeated. I could no longer sit up. Eventually, I ran out of water that I could reach. "I can't do this anymore." I whispered. "End this suffering..." I stirred at the finality of what I had just uttered. "You can't die like this, it isn't over." I told myself. "They can still save you..." I reached for my phone.

As I opened my eyes, the light was blinding. I was in the ER. A nurse came over and explained that I was dehydrated and malnourished. It hurt to turn my eyes and the pain was still there. The on call ER doctor came in and I told her my entire story. She asked me again why my doctor hadn't called me. I once again explained he was on vacation and no dr. was covering for him. She pursed her lips and left the room. The pain continued and I was tested for toxic megacolon, basically a gangrenous colon that became infected from the bleeding as I understood it.

I was discharged from the ER with pain meds, potassium supplements and an increased dose of Pred'. The day after my discharge, my Doctor returns and chews me out over the phone for "not making the severity of my symptoms clear to my staff." "Are you F**k**g kidding me?" I retort "What wasn't clear? The fact I was in excruciating pain, the fact I was passing blood, the facts I hadn't eaten anything other than saltines or water in weeks, the fact I couldn't sit up or maybe it was that I was sh**ting 30 times a day?" "I'll tell you what wasn't clear, your reason for bein negligent." ...click... (He hangs up.) I returned to the ER a week later with the same problem. My family urged me to go to Mayo in Rochester...

-To be Continued-

Will our masked hero survive and make it to Mayo? Find out next time.
 
Very interested in hearing the rest of your story. Love the title you chose, unfortunately it is true.. Hope you are doing better at this point. Cheers!
 
Keep us updated on your progress, Zugglit. Now that you've dumped that good for nothing person with an "MD" after his name, you will get this under control. Take your new doctor's recommendations into consideration, but also do your research on this site and elsewhere and once you've weighed all your options, decide on the best course of action for you to help you regain your health.
 
Top